January 3, 2008
SCHUYLER'S MONSTER: Advocacy
Transcript:
Rob: You as parents and family of broken children and disabled family members, you are the absolute best advocates for your loved ones. And that's hard. It's hard because it's... we want to defer to experts. Julie and I were both music majors. We had no experience with children. All that we knew was what we, what we felt in our gut about Schuyler.
And, you know, the experts and the doctors, they've been amazing, they've been great for us. But the one thing that they can't do is they can't tell the future. And we want them to, we want to hear that everything's going to be okay.
But the future's not written. You're writing the future, and your child is writing the future. And if you feel like the information you're being given isn't correct, isn't right, you have to go with that instinct. Because nobody knows your child like you do, nobody senses the things that are true and real about your child like you do.
There were two points in Schuyler's life that had we followed the advice we were given, by experts, and really "expert" experts, had we listened to that advice, Schuyler's life would be nothing like it is now. It was the fact that we didn't, we didn't feel right, and that we, we kept pushing for better answers that we finally got them.
So believe in yourself. That's hard, but it's absolutely vital, and in the end, in the end you'll be so glad that you did.
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5 comments:
Got a "sorry video is not availble" message
Not sure why, it seems to be working fine for me. Maybe YouTube was having a brain fart.
So so true. My daughter also has a brain malformation (I've written to you before) but is doing beyond better than what all of our doctors initially led us to believe. I have had to fight for medications that ultimately worked when her doctors said they wouldn't and ask for tests that were deemed unnecessary (but that did reveal the problem). I don't claim to know more than her doctors but in the end they are human and if I'd sat back and let them make all the decisions I don't think she'd be doing as well as she is today.
I cannot wait to read your book!
As a mother of a 21 month old daughter with polymicrogyria, I am anxious and excited to read your book. I keep hoping someday someone will tell me she is okay and her future will be like other children her age. I try to enjoy her each day as my daughter and not who she will be in the future. It's so hard sometimes to just let things happen. It's always- what should I be doing now to help her development.
As a mother of a 21 month old with polymicrogyria, I can also relate to the ups and downs of the medical world and Early Intervention. I spend so much time hoping that someone will tell me she will be ok and this will all just go away. Then I realize that I've spent more of her young life worrying and trying to make her better, rather than enjoying these years with my daughter.
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